PREP REMINDS ME THAT I AM THE ONE TO TAKE RESPONSIBILITY OF MY LIFE: A QUALITATIVE STUDY EXPLORING EXPERIENCES OF AND ATTITUDES TOWARDS ...
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Bjertrup et al. BMC Public Health (2021) 21:727
https://doi.org/10.1186/s12889-021-10766-0
RESEARCH ARTICLE Open Access
PrEP reminds me that I am the one to take
responsibility of my life: a qualitative study
exploring experiences of and attitudes
towards pre-exposure prophylaxis use by
women in Eswatini
Pia Juul Bjertrup1,2*, Nqobile Mmema1, Velibanti Dlamini1, Iza Ciglenecki3, Qhubekani Mpala1, Sindy Matse4,
Bernhard Kerschberger1 and Alison Wringe5
Abstract
Background: Pre-exposure-prophylaxis (PrEP) has been heralded for its potential to put women in control of
preventing HIV infection, but uptake and continuation rates have been disappointing in high-incidence settings in
sub-Saharan Africa. We explored structural and social factors that influenced PrEP use among young women and
pregnant or breastfeeding women in rural Eswatini.
Methods: We conducted two in-depth interviews with ten women on PrEP, and one-time in-depth interviews with
fourteen women who declined or discontinued PrEP. Interviews covered decision-making processes around PrEP
initiation and experiences with pill-taking. In-depth interviews were conducted with nine health workers, covering
experiences in delivering PrEP services, and two focus group discussions were held with men to elicit their
perceptions of PrEP. Interviews and discussions were audio-recorded, translated, transcribed and analysed
thematically, using an inductive approach.
Results: PrEP initiation and use were experienced by many women as empowering them to take control of their
health and well-being, and stay HIV free, facilitating them to realise their aspirations relating to motherhood and
educational attainment. However, the social norms that defined relationship dynamics with partners or family
members either undermined or promoted this empowerment potential. In particular, young women were rarely
supported by family members to take PrEP unless it was perceived to be for protecting an unborn child.
Stigmatisation of pill-taking through its associations with HIV and the burden of daily pill-taking also contributed to
PrEP discontinuation.
(Continued on next page)
* Correspondence: pjb@anthro.ku.dk
1
Médecins Sans Frontières, Mbabane, Eswatini
2
Department of Anthropology, University of Copenhagen, Øster
Farimagsgade 5, 1353 Copenhagen, Denmark
Full list of author information is available at the end of the article
© The Author(s). 2021 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License,
which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give
appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if
changes were made. The images or other third party material in this article are included in the article's Creative Commons
licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons
licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain
permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the
data made available in this article, unless otherwise stated in a credit line to the data.Bjertrup et al. BMC Public Health (2021) 21:727 Page 2 of 8
(Continued from previous page)
Conclusions: Unlike many prevention tools, PrEP enabled women to achieve a sense of control over their lives.
Nevertheless, women’s agency to continue and adhere to PrEP was influenced by social and structural factors
including gender norms, family expectations of young women, relationship dynamics and stigma related to HIV.
Future interventions should address these barriers to promote PrEP use among sexually-active women.
Keywords: Eswatini, Qualitative research, Pre-exposure prophylaxis, HIV, Self care, Women
Background an exclusion of those unable to become sufficiently re-
The HIV epidemic in Eswatini (formerly Swaziland) re- silient [15, 17, 18]. In this vein, Rose and Lentzos (2017)
mains a public health concern, with persistently high argue for a greater understanding of the collective condi-
levels of incidence, particularly among women of repro- tions, power and resources that are necessary to ensure
ductive age [1–3]. By 2018, HIV prevalence was 27% in that responsibility and resilience become a reality [19]. It
the general adult population compared with 35% among is only when these conditions are met that PrEP can
women, and annual HIV incidence was 1.2 per 100 move beyond being simply a medical prescription, to-
person-years among women aged 15–49 years, compared wards achieving its potential as a tool to enable women
to 0.8 per 100 person-years in men [1]. HIV estimated in- to enact the agency that is necessary for securing their
cidence is also higher in young women aged 15–24 years health and quality of life on a daily basis [16].
at 1.9 per 100 person-years, compared to their male peers In practice, social barriers including HIV stigma and
among whom it reaches 0.8 per 100 person-years [3], structural factors such as those that impede regular ac-
demonstrating the need for HIV preventive measures for cess to health facilities [18, 20–23] may undermine the
adolescent girls and young women (AGYW) in this set- empowerment potential of PrEP, but few studies have
ting. Furthermore, biological changes during pregnancy explored how women experience these opposing dynam-
and the postpartum period, such as hormonal and im- ics. In this context, we explored the structural and social
mune responses, increase HIV susceptibility among factors that influence experience of PrEP use and con-
women [4, 5]. This increased susceptibility together with tinuation among AGYW and PBW.
the risk of mother-to-child transmission makes pregnant
and breastfeeding women (PBW) an important target Methods
groups for HIV preventive measures including pre- Study setting
exposure prophylaxis (PrEP). Since 2007, Médecins sans Frontières (MSF), in collabor-
The widespread provision of antiretroviral therapy ation with the Ministry of Health, has been providing HIV
(ART) and behavioural interventions such as promoting care in the predominantly rural Shiselweni region of Eswa-
partner reduction and condom use have been insufficient tini. In 2017, a PrEP demonstration project investigated
for HIV epidemic control, even when coupled with bio- PrEP provision among the general population. A nested
medical prevention interventions such as male circumci- qualitative study explored the structural and social factors
sion [6–9]. In 2015, the World Health Organization that influenced PrEP experiences of AGYW aged 16–25
(WHO) recommended PrEP for people at high risk of years and PBW aged ≥16 years to inform national PrEP
HIV acquisition, defined as groups with incidence above 3 roll-out.
per 100 person-years [10], following several studies dem-
onstrating its effectiveness in reducing HIV infections
among high-risk populations [11, 12]. Sampling and recruitment
Female-initiated biomedical HIV prevention technolo- We purposively sampled participants for IDIs to include
gies such as PrEP have been heralded as offering new clients with a variety of PrEP histories. Sampling in-
possibilities for women to reduce their HIV risks by giv- cluded AGYW or PBW who i) had been on PrEP for up
ing them control over the decision to use them [13]. to 6 months; ii) had initiated PrEP in the previous
However, the promotion of ART prevention approaches month; iii) had been offered PrEP but declined to initi-
(e.g. PrEP, prevention of mother-to-child transmission) ate; iv) discontinued PrEP at the first monthly visit at
also imbues the person taking the medication with a re- the health facility; v) discontinued PrEP after the first
sponsibility to care for their own and others’ health that prescription without returning to the health facility
can be either empowering or a burden [14–17]. Despite (Table 1).
the empowering and agential potential of health tech- HIV counsellors recruited AGYW and PBW, explain-
nologies, studies show how beneficiaries struggle to take ing the study before seeking permission for the research
on the necessary responsibilities, potentially leading to team to phone them to schedule an interview. Men for
FGDs were recruited during health promotion sessionsBjertrup et al. BMC Public Health (2021) 21:727 Page 3 of 8
Table 1 Respondent characteristics of PrEP clients (n = 24 Table 2 Respondent characteristics of healthcare workers (n =
respondents) 11)
Age, years N (%) Gender N (%)
18–20 7 (29) Female 7 (64)
21–25 12 (50) Male 4 (36)
26–30 3 (13) Job title
31–35 2 (8) Nurse 4 (36)
PrEP status HIV testing lay counsellors 6 (55)
Declined PrEP 5 (21) Community mobiliser 1 (9)
On PrEP < 1 month 9 (38) Time in job role, years
On PrEP > 1 month 1 (4) 2–4 3 (27)
Discontinued PrEP 9 (38) 5–7 5 (45)
Relationship status 8–10 1 (9)
Multiple partners 3 (13) > 10 2 (18)
Partner, living together 3 (13)
Partner, not living together 17 (71)
Single 1 (4) circumstances. We conducted one-time IDIs with 14
AGYW and PBW who declined or discontinued PrEP,
Status of partner(s)
exploring reasons for these decisions, and with 11
Known HIV-serodiscordant relationship 6 (25)
healthcare workers to explore their experiences of
Non−/unknown HIV-serodiscordant relationship 18 (75) providing PrEP services and their suggestions for im-
Children proving PrEP uptake and retention. Interviews lasted
No children 2 (8) approximately 60–90 min, and were conducted in a
Pregnant 3 (13) private place of the participant’s choice by the lead
author, a trained anthropologist (PB), and/or a local
1 child 11 (46)
qualitative research assistant (NM or VD), matched to
2 or more children 8 (34)
the sex of the participant. After each interview, notes
Educational level and observations from interviews were written up and
Primary 6 (25) debriefing sessions were held between the interview-
Secondary 14 (58) ing team.
Tertiary 2 (8) We conducted two focus group discussions (FGDs)
with 11 men from the community, exploring perceptions
Not specified 2 (8)
of and attitudes towards PrEP. These were held in the
Employment status
community, facilitated by the two local research assis-
Employed 1 (4) tants (VD and NM) and lasted approximately 1 h. The
Unemployed 16 (67) age range of the men was 18 to 60 years of age.
In school 7 (29)
Data analysis
targeting men. Health workers involved in the delivery IDIs and FGDs were conducted in SiSwati and
of PrEP services were purposively sampled from four fa- audio-recorded following informed written consent.
cilities, ensuring the inclusion of different cadres and Audio-recordings were translated and transcribed
roles (Table 2). into English.. Thematic analysis was conducted
whereby transcripts, fieldworker notes and observa-
Data generation tion templates were coded iteratively and inductively
We conducted two rounds of in-depth interviews in NVivo10 by PB, NM and VD. Codes were progres-
(IDIs) with seven PBW and three AGYW who were sively incorporated into a coding framework that was
not pregnant or breastfeeding. The first interview cov- developed continually to enable inclusion of emer-
ered their personal circumstances, reasons for initiat- ging categories, and analytical memos were written
ing PrEP and early experiences with pill-taking, while to aid the process of raising findings to a conceptual
the second interview covered later experiences with level and to explore relationships between emerging
PrEP and any evolution in their personal themes.Bjertrup et al. BMC Public Health (2021) 21:727 Page 4 of 8
Results For AGYW, both PrEP and contraceptive pills were
HIV risks seen as items that would enable them to fulfil future
Most women felt at risk of HIV infection due to rela- educational and career aspirations, essential for the fi-
tionships that they characterized as lacking mutual trust, nancial independence that many craved, and that they
unreliable and unstable, as well as difficulties negotiating believed would be undermined if they seroconverted or
condom use with their partners. Women described how fell pregnant:
sexual relationships and encounters were difficult to pre-
dict and control – for example, due to having a migrant I want to finish school, while not having a baby and
partner who would turn up unannounced or because I did PrEP because I don’t want to be HIV-positive.
they were linked to economic reasons. Unplanned, and […] I do not trust love; rather I trust that PrEP and
often unwanted, pregnancies made women feel Jadelle [contraceptive implant] will help me
dependent on their child’s father as a breadwinner, par- (Woman 18–20 years).
ticularly as most women were unemployed and unable
to provide for a child alone. This economic dependence
inclined women to stay in relationships where they felt “PrEP for life” and pill fatigue
at risk of HIV. While PrEP enabled some to exert a degree of agency in
their sexual lives, the unpredictability and lack of control
PrEP as an enactment of agency and self-care that characterized the women’s sexual relationships led
Women highlighted several ways through which PrEP them to perceive their need for PrEP as lifelong or con-
represented an enactment of agency, enabling them to tinuous until they found a stable partner or got married.
take control of HIV risks and protect themselves and/or This in turn could lead to pill fatigue and discontinued
their baby from HIV infection. It afforded them peace of use, with some PrEP using participants starting to ques-
mind and confidence that they would not become in- tion the relative advantages of taking antiretroviral
fected, which in turn would ensure that they could stay (ARV) drugs for prevention over taking ARVs for treat-
healthy and see their children grow up. This motivation ment, given the perceived similarity in the pill-taking
could lead them to overcome financial barriers to clinic burden:
attendance:
I was tired of the pills, they are big and like ARVs.
I’m committed to this [PrEP]. Even if I don’t have You have to take them every day and they are diffi-
transport money, I’ll rather try borrowing it from cult to swallow. I felt like I have to take it for the rest
neighbours, so I’m able to go to the clinic to get my of my life […] It is like I already have the virus
PrEP pills. Then I can raise my children properly (Woman 21–25 years).
and not end up having HIV (Woman 21–25 years).
All the women in HIV-serodiscordant relationships
Continually testing HIV-negative, when coming to stated that their partner was on ART. However, some did
follow-up visits at the clinic, reaffirmed women’s con- not seem to know that this would reduce their HIV infec-
fidence in their choice to initiate PrEP. Most women tion risk, nor did they know their partner’s viral load (VL)
described the decision to initiate PrEP as being their results. Furthermore, a few of the women who were inter-
own to take, appreciating the autonomy that this viewed expressed uncertainty as to whether their partners
afforded them by removing the need to negotiate with were taking ARVs as prescribed, and understood that this
their partners as was the case with condoms. How- perceived lack of responsibility on the part of their partner
ever, some were later confronted by partners who felt increased the risk of acquiring HIV:
they should have been included in the decision.
PrEP use also evoked a sense of responsibility and I feel at risk, even though he is taking the pills
care for one’s own life and self-worth. Some women [ARVs], I am not convinced I am safe. He is not re-
recounted how PrEP had served as a reminder of the sponsible. Sometimes he goes somewhere and comes
importance of taking care of themselves, and had home late and then he will not be able to take his
even encouraged them to negotiate condom use in pills (Woman 21–25 years).
their relationship again:
Healthcare workers suggested that they started clients
Now when we have sex, we use condoms. Before I on PrEP if they were in HIV-serodiscordant relationships
started PrEP, we weren’t using condoms. The pill en- without further inquiry as to the HIV-infected partner’s
courages me to use condoms and to know that I will VL result. They sometimes struggled to assess clients’
not end up getting infected (Woman 18–20 years). current risks when providing guidance on PrEP durationBjertrup et al. BMC Public Health (2021) 21:727 Page 5 of 8
for their clients, opting for a perceived simpler and He is right because I might be led to think that when
clearer message of the need for PrEP “for life”: she is protecting herself, it is not because she has
many sexual partners. […] It could bring insecurity.
I think PrEP is for everyone, for life, because we are (Male participant 2, FGD).
exposed every day. If we were to say you have been
taking PrEP for 2 years you think you’re safe now. On the other hand, all women in HIV-serodiscordant
Then for 5 months you don’t take it, then you expose relationships stated that their partners supported them
yourself [to risk] (Health care worker). being on PrEP, which was also reported during FGDs
with men where it was seen to be appropriate:
Social relations and their interactions with women’s
agency to use PrEP “If I know I’m HIV-positive then I’ll understand
Although many women explained that decisions to take that this person is actually doing it for her safety
PrEP could afford them with a sense of autonomy over and my safety. By taking PrEP, she’s actually
their lives, a reported lack of shared decision-making, or thinking for both of us. We will both benefit”
a perceived inability to disclose the decision to a partner (FGD with men).
or family members could lead to challenges in continu-
ing PrEP. Women reported hiding their drugs under Disclosing PrEP use to co-habiting family members
mattresses or other places where nobody would find could lead to encouragement and pill reminders,
them. This lack of visibility made some women forget to which promoted adherence, especially among those
take their pills, or made it difficult to do so in private: who had children or were pregnant. In many cases,
women were celebrated for taking responsibility and
It would be easier to take the pills if they knew about care for themselves and their child (ren). For some
it at home. I need to do everything in secrecy. If they women, however, disclosing PrEP use to co-habiting
knew, there would maybe be someone to remind me family members meant being on the receiving end of
of the pills […] I have hidden my pills and I need to negative comments and attitudes that could under-
look over my shoulder before taking it. If they knew, I mine their motivation to continue PrEP. Young
would keep the pills wherever I wanted, so when I women without children found it particularly difficult
get to my bedroom, I see my pills and that would re- to disclose PrEP use to parents or other parental au-
mind me to take them (Woman 18–20 years). thorities at home, as they feared being sexually active
as a young, unmarried women would be judged mor-
Women who had not disclosed PrEP use to sexual ally unacceptable:
partners stated that taking PrEP was challenging when
they spent the night at their partner’s place, as they My father and my mother, I did not tell them […] I
feared being caught with the tablets. They feared nega- don’t know if they know I’m sexually active. My par-
tive responses from partners, such as being perceived as ents can really give me problems. They can say: ‘as
promiscuous or HIV-positive. Around half of the partici- young as you are, you are taking these pills, and how
pants reported that they had disclosed PrEP use to a sex- do you live your life?!’ (Woman 21–25 years).
ual partner and some stated how this led to arguments:
Parental resistance towards PrEP was also mentioned
We quarrelled because of PrEP. It is as if he hears by healthcare workers, who were sometimes confronted
from his friends that PrEP is for prostitutes. What is with angry parents during morning talks on PrEP in the
the need for me to take PrEP? (Woman 18–20 years). clinic. According to health workers, parents were report-
edly opposed PrEP as they perceived that it could en-
During focus group discussions, some male partici- courage teenage children to be sexually active, rather
pants suggested that PrEP use by their partners might than protecting them from HIV infection risk through
provoke feelings of insecurity and lack of trust within a abstinence:
relationship and that they may interpret its use as an ac-
cusation that they were infected with HIV, which could During health talks, there is the challenge that some
in turn incline them towards physical violence against parents aren’t able to accept. They say that if they
their partners: find these pills in the bedroom of the child, they
might chase the child away from home. ‘It is in our
She must be thinking I have AIDS, that could annoy nature as parents, we cannot accept that our child is
me and I could end up beating her. (Male partici- having sex’ and yet the child is just protecting herself
pant 1, FGD)... (Health care worker).Bjertrup et al. BMC Public Health (2021) 21:727 Page 6 of 8
Healthcare workers also mentioned how reaching elsewhere, among sero-discordant couples, some women
young people with PrEP was difficult, as they would were either unaware of the VL status of their partner or
rarely come to the healthcare clinic, except young preg- did not trust the regularity of their pill-taking [29, 30].
nant women who came for antenatal care. These findings emphasise the importance of regular
counselling for PrEP recipients, with greater focus on
Discussion HIV transmission risks from partners on ART and sup-
This study showed how an array of structural and social port to discontinue and reinitiate PrEP as risks evolve.
factors influenced women’s agency to effectively harness Couple-counselling that focuses on mutual support for
the prevention potential offered by PrEP. While PrEP ART and PrEP adherence could help reduce the time
enabled women to achieve a sense of autonomy over which women need to remain on PrEP. Health workers
their own or their baby’s risk of acquiring HIV and en- also need support to tailor risk assessments to each
couraged a sense of self-worth and possibilities for self- woman, rather than assuming that their risk is lifelong.
care, its longer-term use was often undermined by pill The study had several limitations. It was conducted in
fatigue, family expectations of young women, gender the context of a well-resourced demonstration project,
norms, relationship dynamics and stigma related to HIV, and perceptions of PrEP might change with time as the
over which the women had less influence. intervention becomes more widely available or in set-
While PrEP was perceived to afford some autonomy tings where fewer resources are available. Interviews
over HIV risks, as found elsewhere [18], our results also with health workers and women who discontinued or
highlight challenges in assuming responsibility for daily declined PrEP were conducted once and could not cap-
pill taking “alone”, without support from family mem- ture how their experiences may have evolved. Finally, in-
bers or partners, as was often the case for young women. sights from male partners and family members of
In alignment with other studies from the region, we AGYW are lacking due to the ethical risks and chal-
found that when disclosure was pursued, it did not al- lenges of recruiting these groups for IDIs in this setting.
ways lead to acceptance or support from the women’s
family members or partners, which could trigger PrEP
Conclusions
discontinuation [23, 24].
In conclusion, we found that women’s motivations for
Future access to two-three-monthly injectable PrEP
PrEP were driven by their perceptions of HIV risks and
might reduce the need for women to disclose PrEP sta-
their desire for self-care and control over their HIV
tus, as well as reducing the need for pill-taking re-
risks. However, these aspirations were often undermined
minders by family and partners. A recent study among
by social factors including gender norms within relation-
youth in South Africa demonstrated preference for long-
ships that drove stigmatising associations with pill-
lasting PrEP in injectable or implant forms, highlighting
taking, or within families where moralising attitudes lim-
the benefits of the “invisibility” of such products [25, 26],
ited support for PrEP for young women. Further re-
although other studies have demonstrated cases of in-
search should identify interventions to effectively
timate partner violence following the discovery of
address these social and structural barriers to daily PrEP
monthly rings [27]. Furthermore, longer-lasting inter-
taking and investigate how best to implement injectable
ventions do not address the social and structural chal-
PrEP and out-of-facility PrEP, with integration into fam-
lenges that contribute to HIV-related stigma that PrEP
ily planning interventions for AGYW.
users face, nor do they bring about the moral and emo-
tional support for being on PrEP that seem important Acknowledgements
especially for AGYW. To address this, community-level We would like to thank all of the participants who shared their time and
interventions could be carried out promoting PrEP ac- experiences with us. We would also like to thank all the MSF and MoH
project staff members who supported the implementation of this research,
ceptance among women’s partners and families and ad- especially the healthcare workers who assisted in the recruitment of
dressing the social norms that undermine its optimal participants.
use. Adherence and support clubs could be beneficial for
AGYW on PrEP, regardless of its format, and their ef- Authors’ contributions
fectiveness for PrEP should be investigated [28]. As PB contributed to the conception, design, data collection, analysis,
interpretation and the writing of the manuscript. NM and VD contributed to
young women without children often do not attend the data collection, analysis and interpretation. IC, QM, BK and SM contributed to
health clinic, other out-of-facility models are needed to the conception and design of the study. AW contributed to the conception
ensure they access PrEP in combination with family and design of the study, interpretation and the writing of the manuscript. All
authors commented on the manuscript and approved the final version. PB is
planning measures. responsible for the overall content as guarantor.
Perceptions of the need for lifelong PrEP were driven
by the nature of many women’s relationships which were Funding
often characterised as unstable or polygamous. As found The study was funded by Médecins Sans Frontières.Bjertrup et al. BMC Public Health (2021) 21:727 Page 7 of 8
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